Anyway - his total kept getting bigger and bigger... this was just one total, before he was done... um... yeah... not gonna happen...

So if you haven't read the NOTES ON NOAH - please do so, otherwise you may not understand the rest of this.

So we took him to the DR on Friday, just his regular Ped - and just like I thought, it was an instant referral to the dermatologist. He warned me that he would most likely want to remove it and do a biopsy (which is automatic when they remove anything from the skin) ...

I have to wait until Tuesday to get the date for that, but hopefully they can get him in realitively soon. Last time I went, it was well over a month of a wait - cuz they book up. (rolling eyes) ... one can only hope they make acceptions for situations like this, and have time slots set aside for this type of issue, but I doubt it.

This post covers from May 14 to May 24 - Nathan's Daily Diary entry 22

It has been a long long time since I updated Nathan’s DD …it’s been a combo of being so busy with him and not having the time to write, to being so far behind.I have to start writing it through the day, or sit down and write it at the end of the day – it’s the only way it’s going to get done on a daily basis again.So NOW I get to try to cover the last 10 days in one entry (oh how fun!) …

I know that the 14th through….I’m not sure when, maybe the 20th? …we were having medication issues. I’m not sure if it’s the combo or what but he has been acting as though he’s had a constant headache again – and so we sorta drew back on his migraine prevention meds – and then picked it back up.There were a couple days we only gave him one dose and then did two and sorta left it there.He really seems to do best on only 2 doses of the meds instead of 3 – and it seemed to start about the time we started the thyroid meds … which by the way, about a week ago, Dennis decided to just try to put the half a pill in his mouth – without crushing it.Nathan chewed it a tad but he kept it in his mouth (had started to reject the frosting) … and so we’ve just been doing that and he has been doing GREAT like that!!

So he’s taking his pill by mouth – whole, and is doing best on 2 doses of the migraine prevention meds – so we are leaving him there and will be talking to his neurologist about it – I have to call tomorrow (the 26th) to get it re-filled, we’re running out.

He is currently on my lap with my typing around him – it’s a good thing I am an expert typer!!He has a pen and is writing ALL OVER my calendar!LOL… good thing it’s the end of the month…ha ha

So I had talked about his weights and how AMAZING his weight gain has been over the last month – but I couldn’t find his growth chart from the nurse (cuz it’s always the same scale, and pretty consistent.)So she came on the 15thand I wrote down his weights for the last year so you can understand better just how amazing this is!!

June 26, 2008 – 12 lbs 15oz… 3 oz in 21 days .. so about an ounce a week

August 1, 2008 – 13 lbs 3oz ….. 5 oz in about 5 weeks, again about an ounce a week

Nathan becomes a big brother on 9-9-08

September 15, 2008 – 13lbs 10 1/2 oz …. 7 1/2 oz in about 6 weeks, so a little over an ounce a week

October 14, 2008 – 13lbs 14 oz and 27 1/4 inches … about 3 1/2 oz in 4 weeks – a little less then an ounce a week

December 8,2008 - 14 lbs 2oz …. 5 ounces in almost 8 weeks, a little more then half an ounce a week(if I remember correctly, he had been sick during this time, this is about the time his migraines started, he wasn’t eating well, and he was grouchy as all get out … and had a strep infection on his bottom.)

January 6, 2009 – 14 lbs 11oz and 27 1/2 inches … 9 oz in 4 weeks … we blame this GREAT gain (which you have to admit, a little over 2 oz a week IS a great gain for him) on Christmas Cookies!!

March 17, 2009 – 15 lbs 5 oz and 28 3/4 inches …. 2 oz in 4 1/2 weeks … he gained an inch though and realized his growing had been THERE – but after gaining almost 2 oz a week for the last several weeks, it was a blow to my heart!!

Nathan turns TWO on April 19, 2009

May 15, 2009 – 16lbs 14 oz and 29 3/4inches …. In 8 weeks he gained 1 lb 9 oz!!! OMG !!!OMG !!!Seriously – I feel like shouting from the roof tops right now!AND another INCH!!!WOWZERS!!!Suddenly since starting all the meds, he’s a GROWING MACHINE!!!It’s a little over 3 ounces a week but STILL …amazing!

So now you can understand a little more why I was so excited about this great weight gain he’s got going on!!I can only HOPE that it continues!!! In the meantime – the same day (May 15) his baby brother was weighted and he was 19lbs and 2 inches shorter…at 8 months.Love that fat healthy baby, but it’s not right that little brother is out-growing big brother!Pretty soon big brother is going to start looking like the little brother.Regardless, I’m proud of both boys!

So now that I’ve really shared that …

Nathan has been having rough nights again.He either has been having a hard time falling asleep, or he’s waking up in the middle of the night…for the last several nights he’s been waking up around 1 or 2 am just CRYING and it’s hard to get him to settle down.I would almost think it was Night Terrors since Calahan had them, but it’s not the same thing.He’s not waking up in blood curdling screams – it’s gradual whining/crying and if you don’t respond he gets up.Dennis thinks he’s having nightmares.Either way, it’s not fun.For any of us.There was one day where he woke up at 4:30 and didn’t fall back to sleep until 6am, JUST as it was time for me to get Cal up for school, and then Noah up, get Cal off on his bus and then Noah off on his bus, in the meantime – Kaedyn woke up and then Nathan woke back up …I mean, seriously – no sleep for Mom that day!Especially considering that I hadn’t gone to bed until 1am the night before.

Eating wise, Nathan is doing well.I won’t go to “great’ yet.He is still picky eating, but he is CONSTANTLY eating.Either he’s snacking or eating off what we’re having, or snacking some more… he even has started to go and get his snack stuff (low enough for him to get) and bringing it to us.He has started to sign EAT more, and a lot more at that… he will sign EAT and then point towards the kitchen.Which is WONDERFUL considering he does not pick up on signing well.

Seriously – his ST can work on signing with him and he’ll humor her.I work on it with him at least once a day, and he looks at me like I just grew another head.As if to say “Please woman, I am above communication, who needs to communicate?” He HAS been picking up more words.Now mind you – they are NOT clear but Dennis and I are recognizing them.He still hums A LOT… but he’s starting.It’s baby steps right?Maybe once we get this next hearing test done, and he fails again like I have no doubt he will,we can get on the route of getting tubes in his ears (again have no doubt that is his next step) …MAYBE just MAYBE we can find out then if it’s just the fluid, or if it’s an actual hearing loss.I *still* say it’s an actual hearing loss, but I realize that the fluid isn’t helping, at all.Noah had massive amounts of fluid in his ears too, and when the ENT removed the fluid and placed the tubes, he said it was like trying to pull nightcrawlers out of the ground his fluid was SO THICK.And Noah was talking at 8 months, they weren’t clear but if I told you what he was saying, you could pick it up.Nathan just doesn’t even really try – or actually – is only NOW just starting to try at the age of 2.

Speaking of that….I FINALLY finished his Autism paper work, it’s not easy answering questions like that … especially when you don’t know how to answer the speech ones!I mean – when it says “Can SAY Hi and Bye” … what do you put?He doesn’t SAY Hi or Bye, but he vocalizes it … he hums it…he signs it… does that count?I have no idea.I was actually going to call them and ask them, but then I decided I would go with my gut and just put NO cuz he doesn’t SAY them.I don’t know what the right answer was and apparently I’ll find out when we have the clinic evaluation.I mean he CLEARLY has signs of a higher functioning social sort of spectrum disorder, but who knows if he actually does.I was told most likely, they will do the eval on him now, and wait some sort of time period and re-evaluate him because it’s not going to be so cut and dry with him.

I am going to start working on homeschooling him too.I figure, most likely – after Head Start – I’ll be pulling him out of the public school system and homeschooling him.If things continue the way that they are, then I think homeschooling him would probably be best, but figure since I love the Head Start teacher, and he’ll be put in there for about a month after he turns 3 … (Birth to 3 Early Intervention stops AT the age of 3 and they are automatically put into Pre-school in the school systems here – the teacher that Nathan would be going to is the same one that had Noah from the time he was 3 to when he went into Kindergarten.I love her, she’s great!) …I figure I’ll see how that goes, and go from there.

It’s sad (to me) to think he has less then a year of his therapists coming to the house.But I’m sure we’ll be continuing to see them at times.

Anyway …now that he’s starting to feel better and he’s not so clingy since re-adjusting his meds again, I have a little bit more time to sit at the computer and get done what I need to.Provided… not MUCH more time… but enough.

May 14th

His morning QUAD of Meds ... migraine meds, allergy meds (pink), Ibuprofen (orange) and his pill on frosting before we just started to give him the pill ... it still amazes me, looks like so much med compared to a little guy...

Eating his O-R-E-O ... he loves cookies...
We were having lunch and I noticed that he was taking his chicken from his plate, putting them all in his cup holder, and then back on his plate, then repeat. And when he noticed that I was watching him, he would take them and throw them on the floor. Yes he was eating while he was doing it... but .... I've realized he does that A LOT while he eats

May 17th

The day of the Orange Balloon... lol... We got him an orange balloon and tied it to his overalls. We realized (while playing outside that day) that it was GREAT for keeping track of him! He's so little that we just had to look for the orange balloon in the air and know where he was. LOL... we may start doing this everytime we go to the park or something.

May 19th

LOOK!!!! I ACTUALLY GOT A RARE SMILE ON THE CAMERA!!! YAY!!!!!!!!!!!!!
It was a horribly hot day (I think it got to 90 that day) and we didn't have the A/C units in the windows or anything, so by that night it was still so hot in the house, Nathan and Noah couldn't sleep. Noah was up in his room until after 1am. And around 11 Nathan woke back up and I ended up bringing him back out in the living room thinking he might be more comfortable in his nappy spot on the couch. Well, he kept throwing himself on the floor. So after the third time of putting him up there only to have him throw himself back down, I gave up, and left him. He was fast asleep on the floor in about 5 minutes - it was cooler down there I guess, and that's what he wanted.

May 20th

Yes his undershirt looks dirty but only cuz he insists on letting his milk seep out of his mouth when he drinks. For example if you sit there and pull his cup out of his mouth cuz it's just hanging there, all this fluid he'll have stored in his mouth without swollowing will just seep out after it... the cup is like a dam. (rolling eyes) ... so I decided I am not changing him 100 times a day because he does this. He does it if we pull it out, he does it when HE pulls it out - he finds it funny to tag the furniture, floor, whatever with milk and play in it.
Here is Nathan waiting to see if his boy Kris won Idol or not - he was cheering him on since early on - everytime Kris would sing he would clap and clap... course he clapped for my boy Danny too but we all know how that turned out! (Third place, grumble grumble)

May 21st

Those two paragraphs were ALL I had left to do, a couple of the bubbles that I couldn't decide HOW to answer and double checking everything (Autism Clinic paperwork)
Doing BUBBLES in the bedroom for over an hour! There is NOTHING like blowing bubbles for an hour.. lol..
My bad attempt to get a picture of all four boys for the The 4 Brothers Ranch Homeschooling Blog... lol...

May 22nd

Trying on his BIG BROTHER'S shoes ... lol... this is just too adorable!

May 23rd

GET THAT CAMERA OUT OF MY FACE!!!!!!! Seriously woman!
Going bye-bye to the library and other errands!!!
Nathan's crocky boo-boo.... After our errands we had gotten home, I changed into my PJ's which involved me going into my room and changing, Nathan followed me... something happened and I left the room without making sure Nathan followed me, and then my mom called so we were talking for awhile (not real long) when I realized - I didn't see Nathan. So I asked where he was, and Dennis didn't know... I checked the kitchen, the hallway... Noah's room... now mind you he has this habit of going into rooms and shutting doors behind him - then knocking the door and whining like YOU did it TO him and not him doing it himself, it's a way fro him to get attention. LOL.... so I opened the bathroom door with a sudden fear of hoping no one left the toilet seat up and he jumped in (shivers) but alas, no one in there... wasn't in Noah's room, or his room, both doors were open, so I look at the end of the hall to MY room.... door is shut, I know I didn't close it behind me... so I go down there and open it up, and sure enough, there is Nathan sitting on the floor, but he's playing with a needle nose plyers - doing the whole crocidile thing with them (opening and closing them) ... and as I'm reaching for them to take them away, he catches his leg - OWIE!!!!!!!! Yeah, that hurt.... so it's his Crocky boo-boo...

May 24th

I apparently didn't take any photos yesterday .... bad me. I usually try to get a picture of him every day - regardless. Buuuuut I don't have ANY pictures from yesterday. (or a couple other days ...

I hope every one has a happy Memorial Day today - please remember those service men and women who have served our country and died for our freedome. It's not just a day of BBQ's.

Stay tuned for today's installment of Nathan's Daily Diary (to be posted tonight after he goes to bed)

Wednesday, May 20, 2009

For those of you who are not familiar with Noah's story, my one pound twelve ounce miracle born with a rare genetic disorder, who I was told wouldn't survive pregnancy ... you can find his Pregnancy And Birth Story on this blog, and you can also go to my other blog and read an article I wrote about him called AGAINST THE ODDS which is also featured on the Be Not Afraid Website (to get to it you click on STORIES and then TRISOMIES AND OTHER RARE MOSIACISMS and then on AGAINST THE ODDS it will look like this ... (I removed the writing other then the menu)

Then you should see ....

Anyway ... Noah has had a birth mark on the side of his head since birth... (duh it's a BIRTH mark) he also had port wine stains on his face. Nathan had the port wine stains also. Anyway - I noticed rather recently that the center of his previously flat oval birth mark (about 1 cm by 1 1/2 cm) has risen in the middle ... this is my sad attempts of trying to get it in picture

So being stupid I looked up skin cancer...

Symptoms

Early signs

The most important warning sign for melanoma is any change in size, shape, or color of a mole or other skin growth, such as a birthmark. Watch for changes that occur over a period of weeks to a month. Use the American Cancer Society's ABCD rule to evaluate skin changes, and call your health professional if you have any of the following changes.4

A is for asymmetry. One half of the mole or skin growth doesn't match the other half.

C is for color. The pigmentation is not uniform. Shades of tan, brown, and black are present. Dashes of red, white, and blue add to the mottled appearance. Changes in color distribution, especially the spread of color from the edge of a mole into the surrounding skin, also are an early sign of melanoma.

D is for diameter. The mole or skin growth is larger than 6mm or about the size of a pencil eraser. Any growth of a mole should be of concern.

Signs of melanoma in an existing mole include changes in:

Elevation, such as thickening or raising of a previously flat mole.

Surface, such as scaling, erosion, oozing, bleeding, or crusting.

Surrounding skin, such as redness, swelling, or small new patches of color around a larger lesion (satellite pigmentations).

Sensation, such as itching, tingling, or burning.

Consistency, such as softening or small pieces that break off easily (friability).

And wasn't happy.

Stupid. I've already made an appointment and all that will happen is he'll be referred to a dermatologist and from there who knows - I know there will be a biopsy in the future which will be the end of Noah's world (because he's terrified of anything DR related). I am really scared. The places we know where his disorder is, one of them is his skin. The philosophy we have to live by, anything can happen at any time with any organ... it's in his skin. I'm scared. I'm trying SO HARD not to think about it.

So I ask you - if you pray, PLEASE pray. If you don't, do whatever you do. Positive thoughts... nothing but good news where this is concerned. It's bad enough one of my best friends is waiting for biopsy results. It's bad enough I went through a leukemia scare with Calahan when he was 2. Now I'm having nightmares that something is going on in my miracle man.

I got too comfortable with everything, I started to only think about it really when he got sick. I started to only have the panic attacks when he got sick. Now - I'm trying not to think about it and I'm trying to be positive. But I can't push away the fear.

Tuesday, May 19, 2009

I want to thank CandiceR at Mama's Insight for "A Sushi Grade Blog!" award!! You can see it proudly displayed in my menu to the side. It's my very first award over here at this blog!!

I got the same award at my other blog twice, and once over here from Shelley at I’m Still Standing. Thanks so much Shelley!! Again you can see it proudly displayed on the side!!

I have awarded BOTH awards to others, but over at A PAGE IN MY BOOK because all that stuff happens over there, this one is mainly just for the kids. I have 30 more people to award the "One Lovely Blog Award" to - and 15 of them are coming from this blog :) So - stay tuned for that (but you'll be directed over there most likely!)

Monday, May 18, 2009

Well things have been crazy here at home and I have NOT kept up on Nathan's D.D. as I should. Once you get a week behind, it's hard to remember the details of each day. I went to catch up last Thursday and then life ran away with me again as I tried my best to get ready for a quick thrift sale and take care of the family. Didn't work very well with blogging.

Over all, the whole week was so hard for Nathan. He was very clingy, whiney and just not himself. We figured he had to have another migraine but it wasn't as *bad* as the rest of them have been for him. So basically we just rode it out the best that we could!

Saturday, Sunday & Monday

Nathan had a very rough days.He woke up early and then whined SO MUCH.You could tell he was in pain for most of the day.He got his meds, he got some milk, some breakfast… and he just sorta vegged on the couch most of the morning.

I have come to realize this is NOT the same boy I gave birth to.The boy I gave birth to NEVER stopped moving.Nathan only moves around half the time lately.

Tuesday, May 12, 2009

Nathan woke up at 4:30 this morning and was up until about 6 when he feel asleep in his highchair right before dinner.We went grocery shopping and he was even whining getting away from the house and usually he loves that.

Wednesday, May 13, 2009

Nathan woke up immediately letting the house know that he wasn’t a happy lil guy!He had a very rough morning.He couldn’t seem to get comfortable and he didn’t.Katy came for therapy and Nathan wouldn’t work.He clung, he grouched, he let everyone know he just wasn’t going to do it.I had already given him his thyroid, migraine & allergy meds, but I ended up adding ibuprofen when she got here.Since starting the medication for the migraines it’s harder to gage the headaches, we know he is obviously still having them, but we just don’t think they are *as* bad.They seem to be slightly better.Maybe over time the meds will kick in more and more.

We had a very laid back morning and didn’t really do much of anything.He had fruit loops, and milk.He had some grapes.Around 11 it seemed to lift a little and he was better.

Around noon we had to go get Daddy (unplanned and Mom forgot his noon migraine meds).He ended up sleeping in the van. When we got back in our area, we stopped at Walmart.Got home and had some lunch, crackers, cheese & ham.He at the crackers and cheese, not a lot of the ham.

Friends came over and we ended up outside, when it started raining.Nathan wasn’t scared at all and he ended up having a BLAST playing in the rain.So I let him!!!

After we got inside – it was immediately time for a bath.After bath we got on PJ’s and had some snacks.I had milk available to him all day (probably drank 4 cuppies) …he had chicken nuggest for dinner.We had to go get Daddy’s car and then by the time we got home (8pm) he was asleep for the night.

Search This Blog

Leave some Love

Leave Some Love! Even if you don't have a blog or account, you can still leave a note!

THERE ARE SPECIAL EDITION NEWSPAPERS, THINK OF SPECIAL NEEDS CHILDREN AS SPECIAL EDITIONS

HEALTHY CHILDREN ARE LIKE DAISIES, THEY JUST NEED THE BASICS OF CARE – FOOD, SUN, WATER

CHILDREN WITH SPECIAL NEEDS ARE LIKE ORCHIDS – THEY NEED THE BASICS AND MORE LOVE, CARE, NURTURING, ETC TO GET TO SURVIVE, BUT THEY ARE JUST AS BEAUTIFUL AS THE DAISIES.

Every Little Bit Helps!

Help My Boys Get To Disney!

Hopping the Blogs

In the Garden of Motherhood, I was given Unique Flowers... ones who weren't made quite like the other flowers... but are loved so much more because they are my own special blooms!

* * * * * * * * * * * * *

My children are unique flowers... just because they have "special needs" doesn't make them any less who they are, any less amazing... their fights have been true miracles, and in my eyes ... their lives are as delicate as a snow flake, no two the same, landing on your warm skin... you must take care to meet their needs.. as their petals thrive and bloom... they are no less beautiful then everyone else .. they are just unique.... individuals.

Ted.com
-
Check this out when you have a minute. Such a blast!!!
http://www.ted.com/talks/rick_guidotti_from_stigma_to_supermodel.html

5 years ago

Help the Animals :)

Ongoing Fundraising ....

We are currently running a fundraiser for our kids, Nathan and Noah - who both have different rare genetic disorders. Please take a moment and read about them! We are trying to raise money for some things insurance doesn't cover, and to get to a conference next summer (2014) if we can. We are focusing on two things right now, both costing over $5,000. If you can donate, wonderful, every dollar counts and is greatly appreciated. Please click the link and check out ourFUNDRAISER.. You can read their stories more by clicking on the page links above...

Fundraising for Noah & Nathan

Our Fundraiser on Fundrazr...

Giving ...

If you would like to donate in another way, like sending us a donation or have a fundraiser for the boys, please contact us for further information: MammaRazzi13@aol.com

Visit My "Everyday" Blog

About Me

I am a loving Wife and the mom to 4 boys, a daughter-in-law, and 1 step daughter. Nonna to two grandbabies.

Calahan (22), engaged to Shila (23) Grandbabies: Clairah (4) Elly (2)

Noah (16)

Jessa (13)

Nathan (10)

Kaedyn (9)

Noah and Nathan both have extensive medical issues. Noah has a rare genetic disorder called Mosaic Trisomy 16. Nathan has a lot of medical stuff going on, a very long list, but no main diagnosis.

I am a photographer, a writer, an all around creative sort. I have CFS/Fibro & at-times severe Psoriasis issues, diabetes, and back issues (degenerative discs, etc) . My husband has severe back issues stemming from a fracture in his back, and also Fibro.

Facebook Badge

Instagram

Follow Me on Instagram

CALAHAN JOSEPH ~ January 5, 1996

Calahan was a surprise.. My ex-husband and I haphazardly decided to try to have a baby after we got engaged. I was only 18, he was 19 ... and it was silly - I was ready for a baby but he was NOT. Course you don't realize that until you fast forward yourself through life. He was due December 25, 1995 - Christmas Day. He was born January 5, 1996... coming overdue and in at 8lbs 7oz and 20 1/2 inches long.

Links For Calahan

NOAH ALEXANDER ~ February 1, 2002

Noah was a baby faught for... Found out at 4 months pregnant that he has a rare genetic disorder called MOSAIC TRISOMY 16. He was due St. Patricks Day 2002. He was born February 1, 2002... coming in at 1lb 12.2oz and 13 3/4 inches long. He was a fighter from the moment of conception.

Complications at Birth: Low Micro-Preemie Birth Weight, On Vent for 40 hours, Brachycephaly craniosynostosis, enlarged right kidney, ASD & VSD (3 holes in his heart all together), eye pupils shaped like footballs, Hypospadious, Natural Circumcision, Hyperbilirubinemia, he had both Apnea and Bradycardia (Brady’s he had, Apnea he didn’t start until a few weeks before his due date)... Brain scan at one point showed some fluid on his brain that was later declared a "variation of normal", umbilical & double groin hernias ...

Complications Past & Now: Small size (At 5 he was 30lbs), mildly physically delayed (mostly due to his small size)... he has dealt with and continues to... oral sensitivity issues (taste & texture)... sound sensitively issues... speech delays....low muscle tone (very bothersome)... hearing loss in his left ear (hearing seems to have gotten worse - 2007)... surgery to correct the hernias @ 6 months, surgery to correct the hypospadious @ 13 months, surgery to put tubes in his ears at 2 years.. went through various gastro testing due to mysterious vomiting issue...

April 2007 - got C-DIFF bacterial infection from antibodics and started to go into Kidney Failure, he almost died.

April 2009 - Noah's heel cords are very tight again, and he needs stretching out every day. If his tone is not better, then by early next year he'll have to be casted for 3 weeks.

August 2009 - Noah has been having increasingly more blood in his urine showing that his kidneys are getting worse. Right now the kidney tests are coming back okay but it's being kept an eye on.

March 2011 - We found out his tone issue isn't just below his knees but effects his whole leg, so they took casting off the table. Also, he doesn't really let anything hold him back. He doesn't really run, he sorta side skips quickly sometimes, and there are times he will actually run, but over all, Noah is just Noah. His kidneys are just something we're going to have to keep an eye on. Noah ended up being hospitalized for a night at Seattle Childrens when he had Influenzia A ... it was attacking his kidneys and he was spilling out a large amount of blood in his urine, his kidney's bounced right back but it was a scary moment. His hearing seems to be getting worse so he's got some hearing tests coming up.

August 2011 - Noah fell down the stairs to our apartment and broke his nose and had to have surgery to fix it. He couldn't go outside and play for awhile due to everyone being afraid he might hit it and trying to avoid another surgery.

September 2011- Noah failed his hearing test in his left ear. Not only is it typical hearing issue but it's in his ear bones too. So it's a lifetime loss, it's not just because he gets fluid built up. So he was fitted with a hearing aid on his left ear. He was super excited to get it, but once he got it - it was very weird and sensory issues ... it was overwhelming for him. So he's only wearing it for school at the moment, even that was a fight.

JESSA LYNN

Jessa is my step-daughter... My Husband's baby girl from a previous relationship. We met soon after he split up from her mom. I haven't had the pleasure of meeting her yet, but I love her, she is part of our family and will be no matter what!!

NATHAN PATRICK ~ April 19, 2007

Nathan was a surprise.. My Husband & I were going to start TTC the month following the month we got pregnant... we found out at 20 weeks, there were complications... with another pregnancy... needless to say, I felt useless and broken. He was due May 13, 2007 - Mother's Day. He was born April 19, 2007... coming in at 3lbs 4oz and 15 3/4 inches long.

Complications Past & Now: Came home on an NG Tube (ended early June '07)... Feeding Issues .. Oral Sensitivity... Torticollis ... Hydrocephalus (August '07, Sept '07)... a Bifid Uvula (explained to me as an upside down heart shaped uvula), he also has some tone issues where they are very loose. Undescended testicles....Aortic Septal Defect...

9 months old: Poor kid has his first Ear Infection, pneumonia, his first diaper rash AND cut TWO teeth all in ONE WEEK! Poor baby!!!

updated April '09 .. there are now suspicions of Russell-Silver Syndrome, hypothyroid, and he has been showing some signs of some sort of Autism (has genetic tests pending, along with more blood work to be done and a evaluation with the Autism Clinic pending) ... He has officially been diagnosed with Failure to Thrive. He also has mild Scoliosis, and is most likely going to start HGH (human growth hormone) in the Fall.

updated August '09 ... All of Nathan's genetics tests have come back fine, including the RSS. Not sure what that means exactly since I read that the genetics test may not be 100% ... and the way he seems to fit. However at this point, it just seems to be one more diagnosis in a long line. He had tubes put in his ears in June and seems to be doing much better with hearing and slowly progressing with speaking. His appointment with the Autism Clinic is Sept. 16.It was determined that Nathan would need more testing before officially diagnosing him with "Autism" however there is more signs there to warrant further testing.

update November '09 ... Nathan had his first hypospadious surgery, and had his undescended testicle on his right side moved down to where it is suppose to be. It went well for the most part, but he came home with a catheter which had to stay in for several days. He'll have to have the second surgery in about 6 months.

Update April '10 ... Nathan has officially been diagnosed with Russell Silver Syndrome

Update August '10 ... Nathan has been going through a lot. He had started Autism testing early in the year, but we stopped due to the fact that we were making a big move from WI to WA State... we have re-started the process of the Autism testing here. We also have talked to his new Urologist about the 2nd surgery for his hypospadious, and in addition, he will need a 3rd surgery for his undescended testicle that has gone back up, they aren't sure if they can try to move it down again or if it'll have to be removed. We also ended up going to the endocrinologist for his hypothyroid and to discuss starting HGH (human growth hormone) after his official diagnosis of the RSS. The process has begun and we'll be going to "train" to give him the daily injections soon.

Update September '10:So ...he had his 2nd hypospadious surgery, and it ... for the most part ... went well, but we had the blessing of dealing with another catheter ... at least this time we didn't have to deal with the bag and whole deal, he just had the tube there so it could leak into the diaper. We actually had to double diaper him, the inside diaper to catch the poo and there was a hole for his plumbing to be supported (due to the surgery) where it could leak into the outside diaper. It was a very very rough week after the surgery, and even after.... but we managed, and survived. He was in a lot of pain. A little while after, we discovered that he had a couple of holes (fistulas) open up and so he has urine streaming through a few holes... so, hopefully he doesn't need a 4th surgery! We'll see though. But ... Part 2 is done! He also had dental surgery to put caps on all of his teeth due to them all rotting thanks to his high calorie diet. :/

Update January 2011:It's official, Nathan has been diagnosed with Autism (specifically, PDD that they believe is due to his multitude of medical issues) ... which I completely agree with. IN addition to that, it has been mentioned based on his last MRI that he is actually MISSING some of his cerebellum, specifically the Vermis .... and that he may not have Dandy Walker, but rather Jouberts (pronounced Joe-Bear's) Syndrome... we are seeing one of the nations #1 expert genetics Doc about it. So we shall see..... we... shall... see.... (no Jouberts Syndrome, sticking with Dandy Walker Varient & RSS)

Fall 2011 ... We've seen cleft palate specialists and they said that if he failed his hearing tests (which he did) that he would have to have surgery on his sub-mucus cleft palate. Also - a speech lady came in, she feels he has a speech disorder called "Dyspraxia" ... and she feels he's going to only be able to communicate properly through communication devices.

December 2011 ... Nathan had a one hour EEG done and then a 24 hour video EEG ... we recently saw Neuro and found out everything is a-ok :D No seizure activity found.

May 2012 ... My amazing Nathan has been through a lot this month! He has been approved to get a communication device, which we won't get for 4 to 6 months (thanks to insurance red tape) and on May 25th he had surgery to repair his cleft palate, got tubes in his ears again, and his uvula was patched. Now he's home and recovering!

September 2012: After a little debate and several failed hearing tests, Nathan was fitted for hearing aids in both ears. He will be getting them in November.

KAEDYN PHILLIP RUSSELL ~ September 9, 2008

Although I we knew we wanted another baby, that pregnancy test turning positive was a shock. Things were crazy after we found out that we were pregnant again. Dennis was worried about money and my health, and everything else. At 18 weeks we got the perfect amnio results showing everything was genetically fine and it was indeed our FOURTH boy!! I did get sick again, but I felt GREAT! For the first time I developed GDD, and I flirted with Pre-eclampsia like usual. But over all the pregnancy was great and I even ended up going into labor on my own 10 days before his September 19th 2008 due date. We had gone in for an amnio to check his lungs to see if he could be delivered and found out I was having contractions every 2 minutes and was 3 cm dialated! Oooooh boy! Things moved quick from there, and I was in the c-section room before I knew it. Kaedyn Phillip Russell was born September 9th, 8lbs 3oz and 18 3/4 inches. He started crying before he was even out of the womb (or had his mouth clear!) ... and he showed the world he had a GREAT set of lungs by not stopping until he was in my arms. He also baptized everyone showing his boy parts worked REALLY well over and over and over.. just when you thought it was done, it started back up!

Pregnancy Complications:(Mom) Gestational Diabetes, Hypertension.... Limited Activity to complete Bedrest, (Delivered via c-section - planned - but moved quickly after found out I was in labor)

January 2010: Kaedyn had a scare with his heart last fall. His murmur got load and everything turned out okay but it did freak Mom out a lot. And his eczema is horrible. It's full body and I can't seem to get rid of it for him. Now we've been back to the DR about it and got a stronger ointment to put on it (with steroids) and a ton of different lotions we bought to try to see what helped him. After only a few days on the new ointment he's much better.

April 2012: Kaedyn is taking after me by more than just looks! He has apparently grasped my allergies too. After a few days with extremely bad hives, he had to go into the allergist. He definitely has allergies, and I suspect it's to more than just dog, cat and grass ....